This event is being sponsored by two very amazing women. Thank you Elizabeth and Michelle!

Thank you also to everyone else who is helping with the event.

When strangers reach out to lend a helping hand by giving of their time, resources and energy, you know that there is pure goodness in world J 

Lily had the blood transfusion today without any problems. Actually, she slept through the whole thing, which took about 3 hours.

Afterwards, she had chemo. That transfusion took a good 3 hours as well. In all, we were at the clinic for nearly 7 hours today.

Lily has been such a trooper all week. She never complained even though every day she had to get up early, spend half the day at the clinic getting treatments and go home attached to a heavy hydration pack. The constant fluids meant that she was waking up several times a night to go to the bathroom. This, combined with the fact that her hemoglobin was very low made for an extremely tired little girl. Nonetheless, through it all, she has had cheerful spirits and a positive attitude. I love my girl!!

We met with a new naturopathic doctor on Thursday. He has been amazingly helpful already and is infectiously positive. He wants to start next week with intravenous nutrition therapy and has sent us a plan for supplements and diet. I like that he is willing to work with our oncologist to find out what is going to work best with Lily’s chemotherapy treatments. From him, we are able to get professional advice from a different perspective.

Next week will be chemo free! However, Lily will have to have daily injections of Neupogen in the hopes that her white blood counts don’t drop too low. Luckily she hasn’t had any uncomfortable side effects from this drug other than occasional bruising at the injection site.

We will be meeting with the naturopathic doctor next week and will pop into the clinic for blood draws on Wednesday. Hopefully there will be no other need for doctor visits!

Thank You!!!

A big THANK YOU to all who participated and helped with the benefit barbecue! It was a great success thanks to you.






  




This week Lily had a break, with chemo only on Monday and no other doctor appointments. Her doctor is back to giving her a full dose of Vincristine and she is tolerating it much better than she did in the beginning of her treatment. Lily felt relatively good all week, and was only extra tired and weak when her blood counts dropped from the chemo the week before. The drop in blood counts usually occurs 7-10 days after certain chemotherapies-- like those she had last week. Lily is given time to recover and get her counts back up before her next intensive round of chemotherapy. All week I had to give her daily injections of Neupogen to help increase white blood counts, but red blood counts can only be increased through blood transfusions and I think she may be getting close to needing another one soon.

Over the course of the week, Lily was able to hang out with her friends, go to girl scouts and attend the lunch my dad’s work had on Friday.  We also went to the Boyce Thompson Arboretum. I was hoping we would see spring flowers, but I guess we were too early; there weren’t many flowers to be seen. It made me sad, remembering our last visit to the arboretum before Lily was diagnosed. It seems like ages ago, but in reality it was less than four months ago! It's strange to think that she had cancer then and we did not know it; she seemed healthy and full of energy. It is also unbelievable how quickly her health was ravaged by it!

Spring break is next week and fortunately both Phillip and I have the week off from work because Lily is scheduled to have chemo every day at the clinic. She will have two more new drugs- Isosfamide and Etoposide- and will have to be on 24 hour hydration throughout the entire week. Each day after her doctor visit, we will be sent home with fluids that will be continuously pumped through her port IV to ensure she stays hydrated and to protect her bladder from the chemo.

Benefit BBQ

My dad's work is having a benefit barbecue for Lily on Friday, March 11th at 11:30 a.m.
It will take place at Earnhardt Toyota 6136 East Auto Loop Avenue, Mesa, AZ, 85206. They will be selling baked goods and $5.00 lunch plates.

Thank you Jim and Jordan and everyone else who is helping!!

Being deeply loved by someone gives you strength, while loving someone deeply gives you courage. ~ Lao Tzu

This week we have certainly had our ups and downs, but I feel like I am learning acceptance and with that comes a feeling of peace and strength.  In small ways this week has been one of insight. Lily’s courage and optimism in the face of everything thrown her way humbles me and makes me stronger.  If she can handle what she has gone through and still smile, then I can do no less. 

On Monday Lily had three different chemotherapy drugs: Vincristine, Doxorubicin and Cyclophosphamide.  She had never had the last two before and had an allergic reaction to the Cyclophosphamide. When she would breathe in her nose would burn, her eyes were red and itchy and her face got swollen. The doctor slowed the infusion, but did not stop it. We ended up staying at the clinic for 6 hours, with Lily cheerful and talkative through it all. 

We met the home care nurse at this visit and she complimented Lily on what a wonderful personality she has, saying that she could be a comedian. Lily was telling stories and cracking jokes and startling the nurses with the dragon puppet she got at the Renaissance Festival. That night, the doctor sent her home connected to fluids through her IV.  Cyclophosphamide is irritating to the bladder and so needs to be continuously flushed from the body. They also gave her a drug called MESNA to help protect her bladder.  Later that night she was sick, but by the next morning was feeling better and ready to go again.

On Tuesday Lily was only given Doxorubicin, a creepy looking red liquid that turns urine red too.  Both of the new chemotherapy drugs can really lower blood counts, so on Wednesday Lily had to start taking another new drug called Neupogen to help elevate her white blood counts. This is given through daily injections, so I had to learn how to administer the shots.  This wasn’t easy for me; things like this make me so nervous. I wouldn’t even willingly set foot inside a hospital before Lily got sick, let alone inject my baby with scary drugs. Necessity has toughened me up though, and I am able to do what I have to do. I am glad that the doctor is allowing us to do all of this outpatient; often children are admitted to the hospital when they are given Cyclophosphamide.

Wednesday night Lily was not feeling well. She was sick to her stomach and that continued all day Thursday so on Friday I took her to the clinic to get her blood counts checked. They also gave her fluids  and anti-nausea medicine intravenously. Her blood counts were okay and the fluids and medicine really helped her feel better. She has been feeling good since and we had a really nice relaxing day today. This morning I pushed her around the trails at the Riparian Habitat and we checked out books from the library. It was great to be outdoors in this fabulous spring weather!